Life...with a Twist of Lyme

Sunday, August 21, 2011

You can now watch the entire documentary film about Lyme disease, Under Our Skin, on line! This film is a MUST-SEE for anyone who has (or suspects they have) Lyme disease!! (P.S. Yes, there are commercials, just be patient!)

Tuesday, August 16, 2011

I want to catch you up on miscellaneous exciting news in the world of Lyme research, so this is a bit of a hodgepodge post.

1) A recent paper in the Journal of Neuroinflammation, written by Judith Miklossy, makes an excellent case for Alzheimer's being a disease caused by spirochetes! Believe it or not, Lyme and syphilis aren't the only spirochetes implicated in this....even DENTAL spirochetes are included as probable causal agents of dementia!

Here is the abstract, plus a link to the entire paper:

It is established that chronic spirochetal infection can cause slowly progressive dementia, brain atrophy and amyloid deposition in late neurosyphilis. Recently it has been suggested that various types of spirochetes, in an analogous way to Treponema pallidum, could cause dementia and may be involved in the pathogenesis of Alzheimer's disease (AD). Here, we review all data available in the literature on the detection of spirochetes in AD and critically analyze the association and causal relationship between spirochetes and AD following established criteria of Koch and Hill. The results show a statistically significant association between spirochetes and AD (P = 1.5 x 10-17, OR = 20, 95% CI = 8-60, N = 247). When neutral techniques recognizing all types of spirochetes were used, or the highly prevalent periodontal pathogen Treponemas were analyzed, spirochetes were observed in the brain in more than 90% of AD cases. Borrelia burgdorferi was detected in the brain in 25.3% of AD cases analyzed and was 13 times more frequent in AD compared to controls. Periodontal pathogen Treponemas (T. pectinovorum, T. amylovorum, T. lecithinolyticum, T. maltophilum, T. medium, T. socranskii) and Borrelia burgdorferi were detected using species specific PCR and antibodies. Importantly, co-infection with several spirochetes occurs in AD. The pathological and biological hallmarks of AD were reproduced in vitro. The analysis of reviewed data following Koch's and Hill's postulates shows a probable causal relationship between neurospirochetosis and AD. Persisting inflammation and amyloid deposition initiated and sustained by chronic spirochetal infection form together with the various hypotheses suggested to play a role in the pathogenesis of AD a comprehensive entity. As suggested by Hill, once the probability of a causal relationship is established prompt action is needed. Support and attention should be given to this field of AD research. Spirochetal infection occurs years or decades before the manifestation of dementia. As adequate antibiotic and anti-inflammatory therapies are available, as in syphilis, one might prevent and eradicate dementia.

Please read and re-read that last sentence in the abstract!! With proper antibiotic treatment "...one might prevent and eradicate dementia"! That is FANTASTIC news indeed!

If only the medical world as a whole will pay attention to this paper.....? That is the $64,000.00 question, unfortunately. I hope the IDSA won't try to stand in the way of treating dementia with long-term antibiotics!!

Of course this is not the end of the story.....biofilms remain a big issue. It is very very difficult to kill bacteria that are protected by a biofilm and Lyme definitely uses biofilms to avoid antibiotics and preserve itself. Still, the results of the Sapi study are extremely interesting, showing exactly which antibiotics are (or are not) effective against the spirochetal and cystic forms of Lyme.

3) Tracking Lyme disease in dogs may help prevent Lyme in humans. This is from a news article in HealthDay: a recent study by a team led by Dr. Paul Mead reveals that when 1% or fewer dogs test positive for Lyme, the risk for human infection is relatively low. But when 5% or more dogs in an area have Lyme, the risk for humans to contract Lyme disease is high.

4) This same news article also discussed another study from researchers in Germany which says that pastures with domestic livestock such as cows and goats have fewer ticks in general and fewer ticks with Lyme disease! Let's go get us some cows!! :)

Friday, July 22, 2011

For those who think we are making progress with the establishment regarding Lyme disease, this will likely cause you to rethink that idea. In my eleven years of Lyme advocacy I've watched the CDC steadily retreat from a more balanced presentation of Lyme to one where they walk in lockstep with the IDSA, spewing the same myths and misinformation. Sadly rather than progress with regards to understanding Lyme, it seems the CDC is choosing to move farther and farther from the truth.

Below is just a sample of lies from the CDC (bold text indicates the most egregious ones):

Full text of CDC answers to Frequently Asked Questions about Lyme located here:

"Finally, blacklegged ticks need to be attached for at least 24 hours before they can transmit Lyme disease."

"There is, however, a great deal of misinformation regarding tickborne coinfections on the internet.The possibility of having three or more tickborne infections or having pathogens such bartonella or mycoplasma (which have not been shown to be tickborne), is extremely unlikely."

"This means that if your blood tests positive, then it will likely continue to test positive for months or even years even though the bacteria are no longer present."

My serologic (blood) test for Lyme disease is still positive even though I finished 3 weeks of antibiotics. Does this mean I am still infected?

No. The tests for Lyme disease detect antibodies made by the immune system to fight off the bacteria, Borrelia burgdorferi. Your immune system continues to make the antibodies for months or years after the infection is gone. This means that once your blood tests positive, it will continue to test positive for months to years even though the bacteria are no longer present.

I heard that if I get Lyme disease I will always have it. Is that true?

No. Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints. Approximately 10-20% of patients experience fatigue, muscle aches, sleep disturbance, or difficulty thinking even after completing a recommended course of antibiotic treatment. These symptoms cannot be cured by longer courses of antibiotics, but they generally improve on their own, over time.

Can you recommend a doctor who is familiar with diagnosing and treating Lyme disease?

The American Lyme Disease Foundation (ALDF) keeps a national list of doctors who are familiar with the diagnosis and treatment of Lyme disease and other tickborne infections. You can access this list by:

Sending the ALDF an e-mail and asking for doctors in your area, physref@aldf.com

Please note that CDC cannot evaluate the professional qualifications and competence of individual doctors. The inclusion of a doctor on the ALDF list should not be seen as an endorsement by CDC. You could also choose to see a doctor in your area who specializes in infectious diseases. Often these doctors are affiliated with a university."

Why does CDC only link to one set of treatment guidelines?

CDC believes that the Infectious DiseaseSociety of America (IDSA) guidelinescurrently represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease. The IDSA, with input from CDC expertand other doctors, has developed and published Lyme disease treatment guidelines."

"In contrast, Lyme disease in North America is caused by a specific type of bacteria,Borrelia burgdorferi, which is transmitted by two species of blacklegged ticks,Ixodes scapularis andIxodes pacificus. While blacklegged ticks exist in the southern U.S., their feeding habits in this region make them much less likely to maintain, sustain, and transmit Lyme disease."

(1) if you've had Lyme longer than a few weeks, you will likely need a LONG course of antibiotics to recover (months or even years of antibiotics).

(2) Lyme-infected ticks have been found in 49 out of the 50 states. You can catch it literally anywhere! Lyme is also becoming a very serious problem in Europe and Asia.

(3) If you have Lyme disease, or have ever had it, you should NEVER donate blood. There's too great a risk of passing the disease on to others.

(4) The IDSA guidelines were deliberately written to conceal the truth about Lyme disease; the controlling members of the panel have a vested financial interest in muddying the waters and making light of the issues.The CDC is now drinking the IDSA KoolAid (guzzling it, actually).

17) You put the margarine in the toaster oven and try to butter your bread. You put the margarine in the cupboard, the knife in the refrigerator, and the toast in the sink. Then you walk around in circles trying to find the toast.

18) You get exercise by going to the bathroom 10 or more times a day.

19) One shelf of the refrigerator is filled with abx (or supplements, herbs, etc)

20) You can't remember how to turn the shower off.

21) You can't figure out how to get the key out of the ignition [you forgot
about the little black button you push in].

22) You can't find your way home and you only took a walk around the block.

23) When your little black book contains only names ending in M.D.

24) You get winded playing chess.

25) You look forward to a dull evening.

26) The best part of your day is over when your alarm clock goes off.

27) You have too much room in the house and not enough room in the medicine cabinet.

28) When you wake up with that morning-after feeling and you didn't do anything the night before.

29) When it takes longer to rest than to get tired.

30) There are three signs of Lyme Disease. The first is your loss of memory, the other two I forget.

31) The only part of your body that gets a "workout" are your thumbs - from clicking on that remote or mousepad all day.

32) When your idea of cleaning the house is sweeping the floor with a glance.

33) You know you have Lyme when you stop to think and forget to start again

34) When you wake up screaming and stressed - then you realize you haven't fallen asleep yet.

35) When your day was a total waste of makeup.

36) When you think to yourself: "This ain't no party...this ain't no disco..."

37) When all the pharmacists and lab workers in town know you on a first name basis.

Monday, June 13, 2011

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs. These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

Tuesday, May 3, 2011

....and certain members of the IDSA are trying to keep the populace ignorant, as usual!!

Keep fighting, everyone! We're in a battle not just with the spirochetes that have invaded our bodies, but also with certain self-centered, heartless factions in the medical community. The IDSA group in question literally has the power of life and death over Lyme patients in this country, because they call the shots regarding Lyme diagnosis and treatment protocols. And they are trying to suppress the truth about THEMSELVES, of course.

I saw the following brief article posted in one of my Lyme groups, so am re-posting it here.

IDSA aims to censor UNDER OUR SKIN TV broadcasts

Posted: 28 Apr 2011 04:10 PM PDT

Open Eye Pictures has recently learned that the Infectious Diseases Society of America (IDSA) has been trying to stop the television broadcast of its award-winning documentary on Lyme disease, UNDER OUR SKIN. Working behind the scenes, IDSA officers and members have been contacting the Public Broadcasting Service (PBS), the National Educational Telecommunications Association (NETA), and local PBS stations, calling our film "dangerous for viewers" and full of "conspiracies."

The Public Broadcasting Service (PBS) was created in 1967 to "provide a voice for groups in the community that may otherwise be unheard," and serve as "a forum for controversy and debate" by broadcasting programs that "help us see America whole, in all its diversity."

We are heartened that no PBS affiliate station has folded under the pressure. UNDER OUR SKIN is the first televised documentary dedicated to educating the public about the plight of Lyme disease patients, who have been abandoned by the medical establishment, in part, because of the IDSA's flawed Lyme guidelines development process.

While the primary focus of UNDER OUR SKIN is to inform viewers about Lyme disease through the eyes of patients, it also includes interviews with several authors of the IDSA Lyme disease treatment guidelines. These authors were briefed by the IDSA vice president of communications before the filming began, and we believe these interviews accurately represent the IDSA viewpoint on Lyme disease.

UNDER OUR SKIN also shows the unfolding of the investigation into the IDSA Lyme disease guidelines by former Attorney General Richard Blumenthal of Connecticut. His final investigative report found that there was:

. Significant conflicts of interest among the original IDSA guidelines authors,
. Suppression of scientific evidence by authors, and,
. Exclusion of panel members with opposing viewpoints.

The IDSA's suppression of dissenting views continues. This time the target is UNDER OUR SKIN. (More examples of IDSA censorship are listed at the end of this article.)

Recently, the importance of transparency and open dialogue in medical guidelines development were underscored in a report by the Institute of Medicine (IOM), "Clinical Practice Guidelines We Can Trust." In this mandate for guidelines reform, the IDSA Lyme guidelines were called out as an example of a process gone awry:

"This case highlights the need for standardization and transparency in all aspects of systemic data collection and review, committee administration, and guideline development, so that questions about these issues do not detract from the science. [Guideline developers]. must be aware of the many, varied observers who will consider their development processes, particularly when their recommendations are likely to be controversial."

And in a recent study in Archives of Internal Medicine, researchers found that out of 4,200 IDSA guideline recommendations, more than half were based on no more than expert opinion and anecdote, not hard evidence, reinforcing points made in our film. (See references below.)

So, as investigative news organizations and documentary film producers - with the help of the Physicians Sunshine Act - begin to shine the light on endemic commercial influences on "evidence-based medicine," it's a wake up call to the medical establishment to clean up their own act before attacking outside organizations dedicated to protecting the public.

In other words, don't shoot the messenger.
____________________________________

Thursday, February 24, 2011

I received this obituary in email and felt I had to share it with you. No, I didn't know the gentleman in question. Unfortunately, this is what can happen if you have Lyme disease and you're forced to rely on conventional medicine and doctors who follow the IDSA guidelines for treating Lyme:

Vernon Dale Kyle, 55, KansasVernon Dale Kyle liked a good story. Mostly about catfishing on a long-forgotten Kansas lake. He was born Sept 24, 1955 in Garnett, Kansas. He had one best friend in those early days, and it was Don. They roamed the Kansas prairie like the buffalo, wild and free! He was raised by Chester and Edna Kyle with one brother and one sister, Jim and Aletha.

Vernon went into the US Army 82nd Airborne division and it wasn’t long before he took his turn in Vietnam in 1974, then on to Germany. He re-enlisted into the US Army Veterinary Corps stationed at Ft. Ord, then to an outpost in San Diego, California. He met Peggy Miller and they married at Cabrillo National Monument at the Lighthouse overlooking the ocean.After discharge, he moved to Tulsa, OK where his two awesome kids were born, Jamie Lynn in 1985 and Jesse Dale in 1988. Vernon went to college and became a journeyman welder and stationary engineer. He specialized in boilers and high pressure systems, and stainless steel welding. He loved coin collecting, nature, and decorative engraving. He returned to Garnett, Kansas in the early 1990’s to support his mother when his father was ill.

He was employed at the Anderson County School District in the maintainence department until suddenly he became too ill to work in October 2007. He was life-flighted twice to the KC hospitals and in ICU and on a rehabilitation unit for five months.Vernon’s illness was bacterial in origin, his family was told by the doctors in Kansas City. When he received IV antibiotics, he thrived. When the doctors took away the antibiotics, he began to fail. The doctors would never identify the name of the bacteria that was trying to take Vernon’s life.

He had symptoms like abcesses in his abdomen and near his lung and kidney, foot pain, rashes similar to a bartonella rash, and little red dots on his body, memory loss, dizziness, joint pain, loss of feeling in his hands, feet, loss of use of fine motor skills, difficulty processing any information, body jerks (myoclonus and severe muscle cramps) and seizures.As time went on he experienced intense bone pain from a collapsing spinal cord, and lost about 6 inches in height. One doctor his family consulted said that Lyme disease and bartonella can cause the bone to not have blood supply and oxygen due to excessive fibrin production in the blood. As time progressed, Vernon needed oxygen, had an intermittent low heart rate of 40, would pass out. He became a diabetic and experienced hepatitis and kidney failure.

By the way, his cat died of tick-borne illness.He could never understand the “controversy" over Lyme disease. Even though other family members were eventually diagnosed with Lyme disease, he was never tested by his doctors, simply because they refused.

Additionally, after numerous hospitalizations, he was denied long term antibiotics by infectious disease doctors in the hospital and his physicians in the community, and was denied testing when his family directly asked for Lyme testing using specialty laboratories. More than three years of advocacy efforts failed on his behalf.During one hospitalization, his family asked the infectious disease doctor, “Can you help him? His family has Lyme disease, will you test him?” That Infectious Disease doctor said, “No,” firmly, immediately turned his back and walked out of the room. The doctor discharged Vernon the next morning.

But Vernon had to laugh when this same, bright, Infectious Disease doctor actually said, “There are no ticks in Kansas.”Several times Vernon was too sick to leave the hospital and care for himself. Even in his weakened condition, once the hospital sent him home in a taxi without any home nursing! His insurance wouldn’t pay any more for his care. Not even Adult Protective Services would intervene, even after many calls.Vernon learned NOT to mention Lyme disease to anyone. No one was willing to test and treat him for Lyme disease and bartonella. Not the Veteran’s Administration hospital, not the big medical centers in Kansas City, nor his local doctor. But they were all perfectly willing to let him suffer and die from tick-borne illnesses. Ultimately, he lost the war.Vernon was left by his doctors to debilitate, and after losing balance, he had repeated traumatic brain injuries from falling. He later was able to get assistance through the TBI waiver program, but after many calls for a higher level of care, even this system failed him.

His family later discovered that he had gone a month without a bath, and often didn’t have food or water, and went to the hospital on his birthday after he collapsed from carbon monoxide poisoning from his furnace. Thankfully, he was with family that day and he was admitted for another time in the ICU.

Yet those medical professionals who were suppose to care for him, didn’t. Every time his family would try to get help for him, those in charge would fight his family. They even refused to help him to apply for full Veteran’s benefits as a Vietnam veteran, and he often suffered from not having enough money to live. He took it well. He kept his doctors laughing even when he knew they were going to let him die.He lived with the courage of a warrior, and endured and persevered through unrelenting pain to the end, which came on Sunday, October 3, 2010. He left a good example of courage under fire, and joy in the midst of sorrow. At his memorial service, his son-in-law recited “Invictus,”

The more his body was crushed by Lyme disease and bartonella, the sweeter and more loving he became. He had given his heart to his Savior, Jesus Christ, rather late in life, and it was evident that his life had changed.

He is already greatly missed by the love of his life, Peggy, and his children, siblings, and neighbors and friends. Now he is truly free, and we are sure he is fishing in heaven and that he caught the biggest fish this time!

Now, please understand, I'm not sharing the story of Mr. Kyle to be morbid; I'm sharing it because I feel that it's important for the Lyme community to have ALL the facts. There is some very important information in this obituary. For example:

1. You can DIE from Lyme disease. Yes, it is possible.

2. If you have Lyme, you should be tested immediately for hypercoagulation syndrome; it's a very common condition for Lymies and that's why poor Vernon lost 6 inches in height when his spine crumbled. It can also lead to a stroke and prevent your medications from being effective.

3. There are parts of this country (USA) which have few or even NO Lyme-Literate doctors (aka LLMDs). And most of the "regular" doctors will not treat Lyme. Some of them live in denial of the very existence of Lyme disease, at least in their part of the country.

If you live in one of those places, you should probably move. Seriously. Otherwise be prepared to fly to New York or Seattle or San Francisco every six months or so to see someone who is willing to give you long-term antibiotics (in defiance of the IDSA edict that no one should receive more than 4 weeks of antibiotics for Lyme even if they are DYING).

Because that's the reason Vernon Kyle was not diagnosed with Lyme, why he never got proper treatment. His doctors had already treated him with antibiotics ... the obituary doesn't say for how long, but I assume it was at least 10 days, maybe longer.

All of those short-sighted, IDSA-believing doctors Vernon trusted merely said to themselves, "He's already been treated for Lyme, this must be something else!". They really do believe that a short course of antibiotics takes care of 100% of Lyme cases ... always ... end of story.